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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind one eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short bouts with occasional episodes are handled with abortive therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a